My Disability Living Allowance has been cut off. I am no less disabled than I was before the letter arrived a few days ago, but a "decision-maker" from the Department for Work and Pensions has deemed otherwise.

Even though the decision-maker has acknowledged that I need assistance and my disability has worsened slightly, I'm still not going to get money any more.

As I have epilepsy, I depend on the DLA for several things. My partner is away a lot on business and, having once almost burned the house to the ground when I had a seizure while cooking, we agreed it's not wise for me to light the gas if he's not there. DLA enabled me to buy someone to supervise while I cooked, or resort to getting a takeaway. It also subsidised my mobility costs, as I'm not allowed to drive.

DLA is one of the few non-means-tested benefits and enables disabled people to pay for assistance with their personal needs. According to the DWP, only 46% (196,000) of initial claims were successful at first stage in 2006-07, of some 423,000 applications. A further 36,000 DLA awards were made on review and around 22,000 DLA cases were awarded at the Tribunal Service (figures rounded to the nearest 1,000).

In the same period, 32,364 DLA awards were revoked out of 302,286 reapplications following the end of a fixed-term award. In many cases, payment is stopped because a person's needs have reduced. However, anecdotal evidence from welfare rights workers suggests that a worryingly high proportion of claimants are having their award rescinded on reapplication despite there being no change for the better in their medical situation. One welfare rights case worker, who didn't want to be named, suggested it was a way to try and save money on the overall benefits bill.

The arbitrariness of award decisions is frustrating for claimants and can cause real hardship when financial help is refused outright or revoked. A formal review takes up to 11 weeks – if that fails, there is still the possibility of an appeal, but that can take up to 6 months, potentially leaving a claimant with no DLA for up to 9 months.

Shirley and David Musgrove are both blind but have been treated very differently in their applications for DLA. David, 66, lost his sight in an accident and was awarded a lifetime middle-rate care allowance in 1992. Shirley, 53, has retinitis pigmentosa and her vision has steadily deteriorated over the years. Although she applied at the same time as David, with Action for Blind People helping them fill in the lengthy forms properly, she was turned down.

Shirley requested a review of her application but was Lagain turned down. She was finally awarded DLA on appeal but only until her baby daughter turned 16. In April 2007, she had to reapply for DLA and in July learned that she would no longer receive her allowance. One of the reasons given was she had "no bodily function needs", despite a House of Lords ruling in 1994 that vision is a bodily function.

Shirley's loss of her DLA caused considerable stress as she embarked on yet another appeal. It also plunged the Musgroves into a financial crisis. The couple lost their pension credit when David became the only one to still be on middle-rate DLA. They also lost their mortgage interest relief and were confronted with a council tax bill that they had previously been exempt from. Several months after Shirley won her appeal to have her DLA reinstated, they are still struggling to restore the financial status quo.

Poverty is a major problem for disabled people, many of whom have no income other than benefits. Gabrielle Preston, policy officer for the Child Poverty Action Group, says: "Finding out about DLA, applying for it, and keeping it is difficult. The poorest families are less likely to know about DLA and more likely to be turned down or get a low award. Constant reassessments often mean downgrading or removal of entitlement with significant loss of income. Families either accept what may be a wrong decision, or go through the long and stressful process of compiling evidence and attending appeals.

"Although the majority of appeals are successful and DLA is backdated, families can be left in poverty for months until it is resolved without the means to meet disability-related costs. Given that almost a quarter of children living in poverty have a disabled parent, this is a major problem."

Ian Jones, a response worker at Scope who advises the disabled on benefits, says: "Anyone applying for DLA should ensure their GP is fully aware of how their disability impacts on their daily life, not just the medical aspects. When a DLA claim is being processed, the GP is usually asked for a report – if they are unaware you have difficulty dressing yourself or getting up from a chair, they will reply 'unknown' to the questions on the form. Claimants should also contact their local welfare rights office or disability charity to get help filling in the form correctly."

In my own case, I took Ian's advice. I immediately rang the DLA office in Blackpool to request a formal review of their decision on my entitlement and then arranged for my local welfare rights service to write a legal letter of support on my behalf. With luck, I'll have my benefit restored by the end of January 2008.

Postscript

In response to this piece, a Department for Work and Pensions spokesperson said: "Disability Living Allowance is unlike many other benefits in that entitlement is based on the care and mobility needs of each individual rather than a set of specific rules such as earnings or capital. We want all customers who are entitled to DLA to get the correct level of benefit. That's why we are improving our customer insight, making better use of medical guidance and investing in professional accreditation for our decision makers.

"We encourage customers to report any changes in their circumstances. This can include changes to care or mobility needs which may lead to an increase or decrease in payments. If a customer is not satisfied with the outcome, they have the right to ask for it to be looked at again and/or appeal."